Palliative Care Team Shares Top Tips for Capturing, Storing and Analyzing Clinical Data

Data collection is integral to the long-term success of your palliative care program. Quality data will help you evaluate your program over time, demonstrate sustainability and improve your clinical research. You can collect it during the clinical team’s rounds, from patients’ financial records, and by surveying patients, families and staff.

The palliative care team at Transitions and Life Choices (TLC) at Fairview Health Services, one of six Palliative Care Leadership Centers, shares tips for capturing, storing and analyzing clinical data.

TLC Team members who developed the tips: Mark Leenay, M.D., M.S.; Lyn Ceronsky, A.P.R.N., M.S.; Susan Haan, B.S., M.A.; Andrea Brandt, B.A.

Capturing Clinical Data with a Daily Tracking Form

• Decide upon a standardized, validated measurement tool(s) to use for daily collection of patient clinical data.
• The advantages of using an already established instrument are that your resources will be conserved on development and testing, and eventually you will be able to compare your data to those of other programs also using the instrument.
• We suggest The CAPC Clinical Rounding Tool; it includes basic demographic measures and the Edmonton Symptom Assessment Scale and is free to registered users of the CAPC website.
• Since clinical, financial and demographic information for these patients already exists in other hospital data systems, this instrument aims to capture palliative care-specific elements.
• It includes the patient account number and medical record number to later join palliative care data with information extracted from the other systems.
• Before data collection begins, it is important to ensure that everyone on your team is using the instrument in a consistent way to avoid potential problems later with data entry and processing.
• You may want to create a supplemental data collection tool that expands upon the suggested instrument in order to reflect more specifically the objectives of your program. Keep in mind, however, the practical limitations of a lengthy patient assessment.
• If you are interested in surveying family members about the palliative care received by patients, we recommend using The Dart Family Evaluation Interview and Assessment tool, also available for free to registered users of the CAPC website.

Storing Data with an Excel Spreadsheet

• Once the daily tracking form is in use, the palliative care data should be stored electronically using a software application such as Microsoft Excel or Access to facilitate data analysis.
• Each row will represent a patient record and each column, a question or individual data point from your instrument.
• Excel offers ease of use and little up front development time, but major drawbacks are more tedious and error-prone data entry, limited reporting and lack of flexibility as the data become more complex.
• Access requires more initial development time, but is more flexible and secure in the long-term for data entry, reporting, and data integrity.
• One solution is to start with an Excel spreadsheet and convert the data into an Access database once the palliative care program has evolved.
• A simple Excel spreadsheet or Access database can be set up with little computer knowledge, but you will likely benefit from the early involvement of your information technology department or a private consultant.

Analyzing Data with Excel Pivot Tables and Pivot Charts

• Once you have enough data entered, let Excel do the work for your analysis.
• The pivot table and pivot chart are two Excel features that will summarize and graph data.
• A pivot table is an interactive table that quickly summarizes large amounts of data.
• A pivot chart graphically represents the data in the form of a line graph, bar graph, pie chart or other graph type.
• Further documentation is available within the Excel Help Function.
• Access can also be used to produce reports; or you may wish to import your data into a statistical software package such as SPSS for more complex analysis.

Tips such as these and other valuable palliative care program instruction are taught in the PCLC curriculum. To learn more about visiting a PCLC or which PCLC would be most beneficial to your team, contact Matthew Henry, PCLC Program Coordinator at (212) 201-2683 or matthew.henry@mssm.edu.

Fast-track your palliative care program through two days of on-site, hands-on training and a full year of follow-up mentoring. Attend one of six Palliative Care Leadership Centers (PCLC). You and your team will learn from the experience of established palliative care programs how to finance, design, market and operate a successful program.

CME credit is available for physicians.
Nursing and Social Work credits pending.

To learn more about this initiative, visit www.capc.org/ palliative-care-leadership-initiative. For more information about the individual PCLCs, click on their name below. The Leadership Centers are holding 2006 training sessions on the following dates. We encourage you to apply soon while sessions are available.

Fairview Health Services – Minneapolis, MN
January 18-20
March 29-31

Massey Cancer Center of Virginia Commonwealth University Medical Center – Richmond, VA
January 23-25
February 20-22
March 20-22

Medical College of Wisconsin – Milwaukee, WI
January 25-27
February 20-22
March 20-22
April 17-19
May 22-24

Mount Carmel Health System – Columbus, OH
February 16-17
March 16-17
April 20-21
May 18-19

Palliative Care Center of the Bluegrass – Lexington, KY
February 22-24
March 8-10
March 22- 24
April 5-7

University of California, San Francisco (UCSF) – San Francisco, CA
February 2-4
April 3-5

Note: The above list does not guarantee availability. Sessions fill months in advance and registration is on a first-come, first-served basis only.

Join us for the first-ever Palliative Care Leadership Center (PCLC) Reunion Conference, open only to PCLC attendees and graduates. You will:

• Meet face-to-face with your PCLC mentors
• Receive advanced instruction while exploring new tools and content
• Network and learn from the experience of your PCLC peers.

5.5 category 1 credits toward the AMA Physician’s Recognition Award
6.6 nursing contact hours available.

Event Information:
Date: February 8, 2006, 8 a.m. - 7 p.m.
Location: AAHPM Annual Assembly
Hilton Nashville Downtown
Nashville, Tennessee
Price: $275 per person

This event is being held as a Pre-Conference session of the 2006 American Academy of Hospice and Palliative Medicine (AAHPM) Annual Assembly. (Full Annual Meeting registration is NOT required to attend the Reunion Conference.)

Questions:
Unsure about your eligibility or want to learn more about the program? Please contact Matthew Henry, PCLC Program Coordinator, at (212) 201-2683 or at matthew.henry@mssm.edu.

How to Register:
To download the registration form (instructions included), please visit www.capc.org/palliative-care-leadership- initiative/registration-form.pdf.

To register online, visit www.aahpm.org.

To learn more about this event, please visit www.capc.org/ palliative-care-leadership-initiative/ reunion-conference.

The following are recent news items from our palliative care colleagues.

Mount Sinai Integrated Fellowships in Hematology- Oncology/Palliative Medicine and Geriatrics/Palliative Medicine
Two new integrated fellowships offer more than traditional clinical training. Sponsored by the Hertzberg Palliative Care Institute at the Mount Sinai School of Medicine, New York City, the fellowships provide intensive mentoring and rigorous clinical, educational, and research training. They are designed for individuals who want to be positioned for national academic leadership in their core subspecialty of hematology-oncology or geriatrics and the rapidly growing field of palliative medicine. Apply now for academic years 2006-2008. For more information, click here. Contact: palliativecare@mssm.edu, or call (212) 241-1446.

Mount Sinai School of Medicine Offers Mini-Fellowship in Geriatrics
The Mount Sinai School of Medicine is offering a mini- fellowship entitled “Geriatrics for the Non-Geriatrician: How to Integrate Geriatrics into Your Curriculum and Your Teaching” for faculty responsible for teaching medical students and residents how to care for older adults. The mini- fellowship is a no-cost, three-day intensive course taking place March 6-8, 2006. Applications are considered on a rolling basis; candidates are encouraged to submit their applications as soon as possible. For more information and to view the full event information, click here. Course is free of charge to all participants! To obtain an application or for more information contact: Karen Sauvigné, MA, at (212) 241-6948 or Karen.Sauvigne@mssm.edu.

Palliative Care Blog
Check out the blog started by David Weissman, MD, Director of Palliative Care, Froedtert Hospital, and faculty member at the Medical College of Wisconsin, one of the six Leadership Centers. Dr. Weissman hopes you will visit the site and contribute to the discussion of palliative care education, clinical care issues, health organizational change and health policy. To view the blog, visit http://growthhouse.typepad.com/david_weissman/

Medical Student Project Makes Advanced Directives Easy and Accessible
Accessing and completing advanced directives online is now easier thanks to three medical students from the University of Rochester who teamed up to create www.doyourproxy.org, a free, not for profit Web site dedicated to making advanced directives easy to fill out. This great online tool helps people create both health care proxies and living wills online. Other features include the ability to print the resulting documents, save digital copies on your hard drive, and send out email summaries of your advanced directives to family, friends and one's doctors.

New Report on End of Life Care Just Released
The Hastings Center has just released the report, "Improving End of Life Care. Why Has it Been So Difficult?" The report is free to registered users. To download a free PDF file of the report, visit The Hastings Web site at www.thehastingscenter.org.

Request for Chaplain Job Descriptions
CAPC is seeking chaplain palliative care job descriptions to add to the sample list of position descriptions for palliative care team members on our Web site. Submissions are greatly appreciated and encouraged. Shared information helps not only your colleagues, but also the palliative care field! E-mail your submissions to Margaret Schutz at margaret.schutz@mssm.edu.

To read more about palliative care in the news, including the latest article in The Los Angeles Times please click here.